Thank you for visiting my blog. This was supposed to be about Breast cancer, and later, my stage 4 breast cancer, but then it became about much more. Healthcare in general, the challenges of parenting disabled children, and also documented the writing of my book, The Special Parent's Handbook. Hopefully you'll find something here that will resonate in some way with you, and if you'd like to read more, particuarly about special needs parenting, please visit my website http://yvonnenewbold.com/

Friday, 3 August 2012

One Boob Down

I’m home again
after 4 of the very worst days of my life. Up until now I’ve been able to hold
things all together and stay firmly positive and upbeat, but over the past for
days in hospital I completely fell apart emotionally. My friends and family are
all cheering me from the rafters, convinced I’m brave and courageous. Well the
past few days has proved I am a total fraud in the bravery stakes. I was a
blubbing, frightened, vulnerable idiot, making everyone’s life, both nurses and
patients, much harder to cope with.

For the first
time, I met and talked to several women with far more advanced cancers than
mine, facing very depressing likely outcomes and coping with intense pain, and
always with grace, humour and stoicism. These women still found the resources
to reach out to me in my despair and offer me their compassion and comfort
which I simply didn’t deserve.

99% of my
trauma was a direct result of my needle phobia, and I have to confront this
somehow and quickly, or I may reduce my survival chances significantly. I have
written another piece detailing the causes for my intense fears, which I will
publish as a blog as soon as this one is posted. It is long, and quite
harrowing, so please only read it if you really want to.

I was admitted
to hospital on Saturday, because of this wretched infection I had. Despite the
5 days of antibiotics, it was getting much worse, and the only way of sorting
it out before mastectomy day two days later was intravenous antibiotics.I learnt all this in the space of a rather
difficult hour.

Mr Lovely, arrived
at my bedside and told me that I was
definitely going to have to stay in hospital, which also meant no final outing
in front of the world’s cameras for my boobs the following day at the Tennis
Olympics. Then I was rumbled by Mr Lovely, who has been reading my blog, knows
his new nickname, and has been teased all week about it by some of the nurses.
Oops, I nearly died of embarrassment. Then, as if all that wasn’t enough to
ruin my day, I went for a walk in the grounds with WM, and a bird crapped all
over me. Fabulous.

However, Mr
Lovely reading my blog hasn’t been all bad, because he was able to tell me I
got it wrong. I don’t have stage 3C cancer, I have stage 3A, two increments
less serious, and in his view, still eminently treatable. Yippee! In the great
scheme of things, birds are allowed to crap all over me when I’ve just been
given really hopeful good news concerning my longevity.

So on Sunday,
my Dad went to Wimbledon in my place, and all day long everyone
there was texting me so fast and furiously that I couldn’t keep up.

That afternoon
3 special people came to visit me, and really cheered me up, two good friends
and my cousin.

Later I had a
real treat when the whole tennis party arrived and texted that they were
outside. It was gone 10pm but the nurses were so cool about it
they just said go and have fun. So we sat in the now deserted canteen while I looked at all
their photos, heard all their stories, and saw the tennis balls autographed by
Andy Murray himself.

It wasn’t
until Monday morning at 8am when it was decided that surgery would
actually go ahead.However, because of
the infection, they didn’t do the portacath, because it has to be done when I am totally infection-free.

So it was a
bit of a flat-spin panic to get everything done in time. I had to have a shower
using the “people-bleach” pink stuff to minimise infection, then leg it over to
Nuclear Medicine for a radioactive injection into the left breast so they can
see the order of the lymph nodes on that side. Then rushing again to get back
to the ward, and I was on my way to theatre just after 10am.

I woke up
again in the recovery area about 2 hours later, and I was able to laugh and
joke with the nurses, and even my oxygen levels were good. I credit the
spiral-ball toy for that – I was off oxygen altogether 3 hours after coming
around.

Then I got
taken back to the ward, saw my beloved WM, and something just went horribly
wrong in my head. I just dived head-first into some weird sort of
anaesthetic-induced depression, and for the next several hours I sobbed and
wailed long, loud and hard, and really tested poor WM to the limits. He is the
most patient, caring, loving man I know, and I really don’t deserve him.

By early
evening I was OK enough for my dad to
bring two of the kids to visit, F and A. Both are so attentive and worried,
although they are coolly trying not to let me see it, and worst of all, A’s
fifteenth birthday was 2 days after my surgery, though in the end that was the
day I came home, which meant that while his birthday wasn’t exactly the
extravagant affair I normally try and arrange, he did have his mum there for
most of it.

Then things
progressed fine until yesterday morning when there was a false alarm about me,
and for a couple of hours they thought I might be haemorrhaging internally, and
I was prepped up to go to theatre all over again. It turned out to be nothing,
and I was still allowed home, but WM came rushing to the hospital because of
the emergency without bringing any clothes for me (the ones I had been wearing
had been crapped on by a bird, remember?!), so I couldn’t leave straight away.

Now I’m at
home, and happy, and feel much better than I ever thought I would so soon after
this big surgery. I still haven’t really been able to take on board that I have
a missing boob, but the little squishy one they’ve given me as a temporary
spare is quite endearing, although I haven’t been brave enough to try it out
yet. A friend earlier came over and spent the entire time stroking in on her
lap like a sweet little animal, and my now 15 year old son was playing catch
with it earlier, until I pointed out that it was a tad inappropriate to play
with his mothers boobs at his age, which made us both laugh.

I also still
have a drain in, a thick plastic tube embedded several inches into my body,
collecting and removing all the blood-stained fluid into a bottle that looks
remarkably like a rather good red wine, so you won’t be seeing me in Sainsburys
for a day or two yet. Then there’s the whole business of sorting me out with
more surgery to fit the portacath, before the chemo adventures can begin.
Meanwhile, I have my own birthday in 10 days time, and wouldn’t it be brilliant
if by then I’m ready to really party at least a little bit?!

Next week I’m
off to see Mr Lovely in clinic again, to find out if the cancer has spread to
the left side lymph nodes. If anyone remembers, please pray, or dance, or sing,
or simply cross your fingers and think of me next Thursday afternoon, because I
am willing with every bone in my body that the answer to that one will be a
resounding “No it hasn’t.”!

Courage is not the act of facing this journey and taking the steps down what you know to be a tough road. In your position and that of many others, we simply do what we must there is no other choice (by this I mean that once you have looked at all the options and come to your own personal conclusion, you simply cannot do something else).

So, cancer, loss of boob(s), chemo, needles etc etc etc... not a choice and I pretty much agree with you there about courage not being part of the equation.

BUT... when you write of your deepest fears for all to read (and hopefully learn from); when you smile and host a laughter yoga session days after surgery; when you enquire of others how they are doing in their own personal battles; when you pick yourself up and tell yourself that you must and will overcome a deep adn harrowing phobia; each and every time you manage to sit/lie still while nurses mess about with needles; every time you allow that little girl inside you to cry aloud; every time you allow a member of team GWS to comfort adn support you... THESE are the times you show us courage. These are the times we sit back and simply admire you. Not for what you DO, but for WHO YOU ARE.

Just carry on being Yvonne, because she is simply, and imperfectly (in the best possible way)... awesome. I write imperfectly because I don't believe in perfect so much, and if you were perfect, none of us would be able to aspire to being as caring, funny and courageous as you are.

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About Me

I've passed my expected "sell by date" of the prognosis I was given when they found out my cancer had spread & loving every minute of it. Knowing that time may be short has been the catalyst to try & make the world a better place for the next generation of families like mine, those who have disabled children. I wrote a book, "The Special Parent's Handbook", telling it exactly how it is. It has become an Amazon #1 Best Seller, & due to the impact that the book has made I was named by the HSJ as being a "Top 50 Inspirational Women in Healthcare 2014". I'm now writing on healthcare topics, speaking at conferences & seminars & through my series of innovative workshops for parents and staff, people are developing better solutions for some of the issues we face. It's all about getting everyone to work together in partnership, to help every child reach their potential. But it's about a lot more than that too. Its about kindness, compassion, listening to each other, collaborating instead of competing, & putting people at the heart of all decisions. To find out more, please visit my website http://yvonnenewbold.com/ or email me on yvonne@yvonnnenewbold.com. Thank you.